Preparing for the journey of amyotrophic lateral sclerosis

ALS is a strange affliction. It is not contagious. There is no pain. Your mental processes are unaffected, but your physical self becomes anamorphic. A lot to do before that happens.

Air plane travel

CHARLOTTE, NC, December 11, 2016 – Many years ago at the 50th birthday celebration for a colleague, he mentioned that the one thing about that particular anniversary was a new awareness of his own mortality.

Since that day, that thought has never left my mind.

Each night I wondered if I had spent my last day on earth and whether I had hurt anyone during the day for which I would regret not making amends.

And with each new sunrise, I was given another gift with which to celebrate my life.

Though essayist Ralph Waldo Emerson is credited with saying that “life is a journey, not a destination” many experts believe the words belong to someone else. No matter. They remain poignant whoever said them first and, as a travel writer, I have always believed in both the journeys as well as the destinations.

Amyotrophic lateral sclerosis (ALS) is rare and strange affliction. It is not contagious. There is no pain. Your mental processes are unaffected, but your physical self gradually morphs into an amorphous being with no control over your own movements.

Sometimes when I ponder the future I look back at my broadcasting career and tell myself, “Well, you always said you were nothing more than a ‘talking head’.”

The ironies of ALS, baseball, Lou Gherig and me

I’m not sure exactly when I became aware of the problem. I recall waking up one morning and noticing I couldn’t lift my left arm. At first I thought I had simply slept on it the wrong way and it had “gone to sleep.”

As my morning routine continued however, I realized my arm still felt dead, as though it wanted to just fall away to the side.

By the end of the day, things were back to normal and all of my dexterity had returned. I thought nothing more about it until the following day when the same symptoms occurred.

When I told my breakfast buddies they said, “Nah, it’s probably just a rotator cuff from all those years of playing baseball.”

“Sure,” I thought. “That was it, exactly” I had heard about pitchers having rotator cuff injuries all the time even though I had no clue what they were.

As the weeks dragged on, with my gimpy arm hanging uselessly by my side, I went to the doctor to see if she could shed any light on the situation. After doing some exercises in her office, she ordered an MRI on my shoulder, neck and spine.

The results only showed a little arthritis in my neck, but otherwise everything was normal. At that point, I was beginning to consider the rotator cuff situation again.

Then came another MRI. This time on my brain. I wasn’t quite sure how to take it when the doctor said, “We got the images back and they showed nothing.”

I knew something was wrong but surely I still had a brain.

The next adventure was a visit to a neurologist. After an initial interview, she scheduled some tests to be done a week later.

As one who has always had good health, and someone who has never spent a single night of my life in a hospital, I am not a prime candidate for poking, probing and testing.

The first portion of the process consisted of a series of what I can only describe as tiny shock treatments. They were similar to the reflex test a doctor does when he pops your knee with a small hammer to see if it will respond. Only these tests involved equipment that was a bit more intense.

The little shocks didn’t hurt really, but every time one of those little charges went off, I felt like a human popcorn machine.

Following that, the neurologist did another series of tests which involved poking me with tiny needles for about 45 minutes. The discomfort was about the same as the shocks, only different. Rather than feeling like a kernel of corn, I now felt like I was part of some grand surgical quilting bee.

When it was over, the doctor came back and gave me the news. It was somewhat like listening to Sherlock Holmes analyze a case.

“I have looked at everything it could be,” she said, “and I eliminated those for one reason or another. Therefore, I must tell you, I believe you have ALS.”

I just sat on my chair and listened. I had no idea what to think or to say or to ask. That rotator cuff was beginning to sound a lot better to me at the moment. But it wasn’t to be.

And so in that brief two hour period, my life changed… completely. My final journey had begun.

I still have no idea what to expect or where that journey will take me. I know that God gave us a beautiful world to explore and I still intend to see as much of it as possible until it is, in fact, no longer possible.

Someone once said, “You come in alone and you go out alone and everything else is a gift.”

How wise that person was. I have seen much. There is more I wish to discover, but when it does end, I have been blessed by all of my “journeys and discoveries.”

Whenever that last trip comes, I take solace knowing it will be the best one of all. And this time I won’t have to take any luggage.

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